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Monday, May 24, 2010

Some where I must have missed the notes that indicated how much square footage I would need to house two motorized wheel chairs, two manual wheel chairs, two hospital beds, a hoyer lift, standing machine and tables. Tables high enough to allow wheelchairs to fit under them, strategically placed throughout my home to ensure eating and other activities would also be accessible. Not to mention the space that it would take to maneuver around two teenage bodies with out bumping their limbs on furniture. In my efforts to be super single mom preparing for the future I some how had not managed to include enough space on my list of necessities. How could I have been so pathetically thoughtless in preparing us for the future.

I watched as my youngest approached our back door leading out to the ramp that would take him into his backyard. Slowly and cautiously he worked his way through the narrow passage through our kitchen. The doorway seemed hardly large enough to fit his chair through and just as if he had become one with the chair he escaped the entrance with out a trace of scuffing wall or wheels. In all my efforts to make our home accessible we still lacked space. My oldest son Zach and I had laughed only weeks ago about perhaps needing to eliminate all furniture and use folding chairs to allow more freedom for Josiah and Cody. Now, I was faced with my next biggest challenge of all, creating an environment that can contain the footage necessary to keep my two youngest sons thriving. A home that would allow them to move freely, safely and not be so isolated to sections of the house. I was faced with finding ways to give them more independence as DMD progressed.

My list of lifts, ramps and widened doorways was only beginning and yet I found my self overwhelmed by the adaptions our next home would require to ensure Cody and Josiah would be safe and able to move from room to room with out being carried. Lifting was certainly now an issue of safety for both of my sons, as well as my self. Only a month ago while spending the weekend at their fathers home, Cody was dropped by his father when he was being transported from wheelchair to bed. We were lucky Cody only required 4 stitches to the back of his head, angels were truly watching out for Cody that day. I winced at the thought of another injury. I have been very fortunate when the boys were in my care our incidences had only been that of minor bumps. As my sons grow in size so does the hardship of caring for them. Lately it had become a common occurrence of bumping a leg on the stairs or doorway. Even furniture now seemed to pose a threat if positioned to close when lifting my sons.

Today I was feeling especially proud that I had not bumped Cody at all this morning while transporting him from his upstairs bedroom to his awaiting wheelchair downstairs. Now that he out weighed me it took every ounce of strength I had to lift him. The stairs connecting our multi level home also had become my enemy. Cody thanked me this morning for sparing his limbs from the impact he was beginning to expect daily. It almost seemed odd for me not to spend my morning apologizing for a bump or two. A friend asked me once about the kind of pain a child with Duchenne might experience. At the time I did not mention bumps and bruising. It was apparent though that these too are a very major concern. When lifting a person with limbs unable to move freely they are often at risk of injury. I felt empowered today though, we started the day off with out added pain. If I could only master bump free days every day I thought to myself. The manual and notes I joke about that are not in existence to my knowledge perhaps are something I am to write. I laughed to myself. After all it seemed adapting had become my ambition.

So now it seemed our new home was in fact becoming even more of a reality as we come closer to our closing date. In thought, I visualized the space we would gain. I beamed at the ceiling lifts I imagined I could have installed. Looking around our present house, silently I prayed that it would sell soon. Hoping it would not add financial concern to the stress I was beginning to feel from planning our relocating. It seemed years ago as I became a single mom purchasing a home larger than the square feet we had was not even feasible. Some where some how I had yet managed another milestone on my own. This was a risk I have to take for my sons. Giving my sons the chance at living in a home that could possibly address all their increasing needs gave me reason to only push myself harder to make this dream into reality. The opportunity to keep my children from feeling like cargo was something I felt strongly about. If binding us financially was the only way I could make it happen this too I would put into the hands of a higher power.

Friday, May 7, 2010

On occasion I have to admit time off from Mommy duty is like being handed time in a bottle. Rare and priceless, for some of us. As women we embrace date night, girls night out or even just time alone relaxing. Times we look forward to and deserve. Divorce has certainly given me some well earned free time. But every now and then a weekend or night where I have no plans occurs and I feel at a lost to the world. I wonder who am I with out my children or a date to remind me of my existence on earth.

I hugged and kissed my two younger sons this evening as they went out the door to meet their father. A free night, I embraced and yet felt troubled by. Every other weekend I had child free. Somehow yet this night left me feeling, its not my children I embraced freedom from. Dateless and no gal pals to hang with I was free to write all night. Somehow still I felt isolated from the world.

A glass of Sangria, a bag red vines and two hours later I still stared blankly at over 30,000 written words in front me. Mother was not the subject of my book and I had no issues to share at present with the world. My Friday night was free from "Mommy duty". I could write all night about anything if I chose to and yet the word "Mother" screamed at me. Mother I said over and over to myself. The one thing I knew I was truly good at and enjoyed, beyond words. The one thing in my life that never let me down or abandoned me. The one job I knew that could reward me in ways I never dreamed. My only real love in the world.

How fitting I thought as I sat rereading my memoirs. Mothers day weekend and I am absorbed in the world according to Mom. After all I am expected to be super mom, able to do it all, multi tasking is nothing. I can provide financially for my sons, buy a home, put one son through college, manage vacations. Exhibit super human strength, lift and carry more than my weight, be fearless and still posses the qualities that make me desirable to date.

Some how this weekend night made me miss my own mother and the unconditional love she gave. The one and only true thing I knew I could count on growing up. I was giving my boys what my Mom gave me, love unconditionally. Love that gave with out needing, love that gave with out demanding. There truly is no love like a mothers love. With out mothers none of us would be here. As a mother I loved and needed my sons beyond anything this world could offer. While the words in front of me danced on my computer I smiled to my self, it was Friday night I was home alone writing. I did not have a date but I was home doing something I loved, writing. As my thoughts began to flow, my block lifted, I found me. I surrendered to Mother, I am she, the best thing that will ever happen to me. It made sense now, my mom was letting me know she was with me.

Mothers Day weekend -I can give my sons a day where all of me is absorbed in them loving me.